Karen and I have been talking again. We'd like to have another Gathering
of Friends in Nashville, TN. We had such a wonderful time at
the last Gathering and hope it will work out to have another.

We'd like to shoot for the weekend of Oct. 6, 7, and 8th, 2001.
That's this October.

It is Columbus Day Weekend. If you would like to attend
please let us know so that we can get arrangements made.
We've made new friends, have lots of "old" friends, and
will continue to make even more friends. We hope you will
consider coming as we always love to meet everyone.

-- Jamie
and Karen

Web Site
Update

The Ribbon web site has been up and running for a couple of weeks
now, we are happy to report. Because of the difficulties we
had over the last month, there are still gaps but, for the most
part, we are back to normal. We would like to remind everyone how important your individual contributions to The Ribbon are.

Message Board: This is a place where you can ask
questions, leave comments for others to read or respond to.
Subjects currently on the Message Board are EOAD, Books on
Caregiving, and New Caregivers, to mention a few.

Dedication Garden: This has always been a treasured
part of The Ribbon web site. Unfortunately, at the present
time, we do not have access to Dedications left there prior to
June 1, 2001. This is the place to leave a Dedication to
your loved one or someone who cares for your loved one, for all
to see. It is easy to use, and creates a lasting tribute.

Top Alzheimer's/Caregiving Site: The logo on the
main page of The Ribbon web site takes you to this site where
each time you go to The Ribbon you are casting a "vote"
for The Ribbon. We have been honored three times to be
included in the Top 4. This site grows almost daily as more
and more sites become available with information on Caregiving.
Do check it out!

Please keep in mind that sharing is the key to caregiving. Share
with others, helping both them and you.

Book Nook

As
a person diagnosed with the early stages of Frontotemporal
Dementia, I found the book "Who Will I Be When I Die"
by Christine Boden, very insightful into the journey that
a person takes from before diagnosis of a dementing illness to
diagnosis and beyond. It was like reading about my own journey. I
am sure that it is the journey of many others as I have heard the
same comments from other persons diagnosed with dementia after
they read Christine's book.

I found it very helpful to share this book with my family members
and friends so that they could have a better understanding about
how and what I was/am feeling. They see me "looking"
like a "normal" person (most of the time), but the
fact is I have been diagosed with a dementing illness and if it
wasnt for the help of pharmacological treatment, I would be much
worse off.

Christine, while writing this book was diagnosed with Alzheimer's
Disease. Her diagnosis has since been changed to Frontotemporal
Dementia.

This enlightening autobiography can only be purchased though
Australia Harper Collins Publisher. It can be bought easily on
the web at http://www.angusrobertson.com.au/. A search of the name or author will get you to the book. Please note too that prices are
quoted in Australian dollars. The U.S. dollar is worth about two
times what an Australian dollar is worth, so the U.S. price will
be about half of what is quoted.

The Dementia Advocacy and Support Network (DASN) held its second
annual meeting in Montana last month. On a farm surrounded by
horses, dogs and skunks, roughly a dozen people with dementia (PWiDs)
from three countries met. Members reported on advocacy
achievements "back home" such as books published,
videos made about their lives, and support groups they have led.
They quickly became friends as they blazed a new, international
trail for advocacy and support. A vital, young activist from
Honolulu described the group as "my new best friends."

In formal sessions, the Board of Directors approved a series of
recommendations to be presented to Alzheimer's Disease
International (ADI) which meets this October in New Zealand. The
DASN board applauded some of the ADI's new Charter of
Principles, and discussed concerns about others. The board
also unanimously approved three recommendations to ADI.

DASN participant Christine Bryden, author of Who Will I Be
When I Die? summarizes DASN's position,

"We recommend nothing less than a new paradigm for the
development of ADI's strategies, based on the stages of all
the diseases that cause dementia." Bryden's book
is currently available only in Australia from Harper Collins
Publishers.

DASN has members in the United States, Brazil, Canada, Australia,
New Zealand and the United Kingdom. Currently, more than
one hundred members range in age from 24 to 74.

Alan Gibbs from New Zealand sent this to the DASN group and gave
permission for us to reprint it. It is meant to be printed
and folded as a handout. Carole was kind enough to send it
to me as an attachment that prints wonderfully. If you are
interested, you may send an email to DrMOM1955@aol.com and
I will send the attachment to you for easier printing.

Note: This article has been posted in PDF format in our Reading Room for printing.Click here to view this article in PDF format.
Click here to download Adobe Acrobat Reader free.

(This space can be used to write the name and address)

Prepared by & used with permission of
Memory Group,
ADARDS,
Tauranga, N.Z.

TO PEOPLE IMPORTANT TO ME

Dear _________

You are a friend to whom I would like to acknowledge my memory
loss.

If you know and understand, this will encourage and support me
and my family. It will also improve community acceptance and
understanding of memory loss.

While it may appear that I have no disability, memory loss does
affect me in my daily activities.

It is an illness over which I have no control and which I did not
precipitate by any action or omission on my or anyone else's part.

Over the page are guidelines to help us all.

Memory loss affects my thought processing ability
I need you to:

Continue to include me in conversations and activities

Give me time to remember and respond

Focus on the things I am still able to achieve and enjoy

At times, take the initiative and then I will be able to join in

Write important details down for me using established support systems (eg. diaries, calendar)

Accept that repetition is a part of the illness

Speak to me directly - not through another person

Treat me with the same respect and dignity as other people, for I still have
adult thoughts and feelings

It will be helpful to you if you understand that:

Recent memories or instructions are the most difficult to recall

New ideas are difficult to learn

Routine is important for me in managing my days

Big group settings make me feel more vulnerable

Role changes may be necessary and may have already occurred

When I forget, it is the nature of memory loss, it's not my fault

The ADARDS office has books and videos which will help you learn more about the
condition

I need lots of encouragement.
Keep a sense of humour, :) laugh with me!

As you will be well aware, I also have impaired hearing - loud
discordant sounds full of audio distortion such as shouting,
large gatherings, white noise such as wind and vehicle noise are
particularly bothersome. You can help our communication by facing
me and drawing my attention to the subject matter as you begin
speaking.

For my part I will endeavour to make your interaction with me a
pleasant and meaningful experience in response to your efforts.

It is not the end of the road in life's journey for me - it means
the road has narrowed, both figuratively and literally - I have
given up driving and probably will have to curtail activities
involving risk and hazards in the future. Please continue to
journey with me.

Thank you for taking time to read this letter.

Regards from,

____________

Links

This was shared by one of our members on DASN, thought you might like
the info as well - Mina Cwadephill

Welcome to BenefitsCheckUp - a free, easy-to-use service that identifies federal and state assistance programs for older Americans. Researching these
programs used to be a time-consuming, frustrating experience. But no longer.

The National Council on the Aging created BenefitsCheckUp to help older adults to quickly identify programs that may improve the quality of their lives. Family and friends can also obtain facts about benefits that their loved ones may qualify for. Chances are, you will be surprised to learn what benefits are available to you, regardless of your income.

Here's how it works: You take 10 or 15 minutes to enter information about your financial situation into an online questionnaire. Then, BenefitsCheckUp explains what benefit programs you may be eligible for and how to apply for them.

Rest assured that BenefitsCheckUp is completely confidential. It does not require your name, address, phone number, Social Security number, or other information that could be used to identify you. You enter simple information, such as your age, income, and ZIP code, and BenefitsCheckUp identifies programs you might qualify for.

I thought you all might find this helpful when you or your loved
one is facing testing. This web site gives names for almost every
test out there as well as a description of the proceedure,
Prepping before, what results could possibly mean and reasons for
the test. Enjoy

When children become the caretakers -- As the boomers hit their 50s, increasingly they find themselves helping out aging parents who are running out of money before they run out of breath. These stories will help you and your parents plan for a comfortable glide into their golden years.

Janssen Pharmaceutical Products, a wholly owned subsidiary of
Johnson & Johnson, said on Tuesday that the US Food and Drug
Administration (FDA) has approved a new oral solution formulation
of its Alzheimer's disease therapy Reminyl.

On this site there are self portraits done by an artist as he progressed with Alzheimer's Disease. I found it interesting. There was a lot of discussion about this by members of DASN who are diagnoised with a dementia.

Drug
therapy for Alzheimer's patients

Doctors are testing a new drug therapy to see if it slows the
progression of the disease. It's an exciting thought, a drug that
regenerates parts of the brain and protects parts not yet
affected by the disease.

Can it really help? Doctors are putting the medication to the
test.

The drug is called Neotrofin, a combination of two chemicals
found in the body.

How touched I am by your comments in The Ribbon, Dean. While John is
still alive continue to write and keep a copy of your thoughts. I
was fortunate to receive your initial thoughts in the mail about
a year or more ago. It is difficult putting a salable book
together--Finding the JOY in Alzheimer's is my sixth. Also, too
many caregivers write about their loved ones AFTER their lived
ones have passed on. I felt fortunate to have been able to
complete two books while my father was alive (SLEEP? WHAT SLEEP?)
He even read pages of one of them and commented upon them--these
comments I've included in "Where's my shoes?" I find a
special poignancy when we write about caring for our loved ones
while they are still living. Once they have passed on...our
stories can still be compelling, but ...?

So, please Dean ...if you wish to share the details with the
world, try to complete as much as you can while John is
alive.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's
Walk Through Alzheimer's (NOW AVAILABLE in Audiobook and in the
German language in August) and Finding the JOY in Alzheimer's:
Caregivers share the JOYFUL times (September release).

Remember please to take care of yourself in this heat. Our loved
ones do sometimes tend to "overdress" so watch for this
and keep an eye on their thermostats in the house. Several
times I've gone over and caught Nanny's heat on with the house
hot inside.

As always, don't forget to visit a support group. As you
know, we are partial to The Gathering
Place (www.theribbon.com/GatherPlace)